Good news

[Marossi]

Just wanted to share the good news I got at my last check-up on Monday. All my blood results are within normal range for the first time in a long time. ! I was diagnosed in November 2017 with PV and elevated platelets (it actually turned out that platelets had been elevated since at least 2011!) After a series of venesections a couple of times a week for a few weeks I started Pegasys in December. I was lucky in that I tolerated it very well from the beginning and suffered no side effects beside feeling a bit knocked out in the 48 hours following the injection. I have to say, however, that the last ten months have been a bit of a struggle as i often felt very tired, dizzy and nauseous. My blood counts continued to rise, necessitating ever-increasing dosages of medication and frequent venesections, and I was beginning to wonder if I would ever get them under control. But Pegasys did kick in eventually and I feel so much better. I went for a 8 km walk on Saturday, had no pains in my legs and did not have to sleep for 3 hours when I got home to recover. I hope my story can give some hope and encouragement to those of us who are just starting out on their MPN journey. The first few months are definitely the worst. We have to learn to deal with the shock of the diagnosis and make adjustments to deal with some debilitating symptoms. It typically takes a while for treatment to be sorted out and take effect and it's not always easy to stay positive. But there is light at the end of the tunnel! My haematologist even thinks I'll be able to decrease the dosage of Pegasys over time.

[Rachelthepotter]

Thats really great to hear: so glad that you are able to do so much.

All the best.

[Superwoman]

That’s certainly good news and encouraging for those with PV.

Jean

[mhos61]

Really pleased that you’re responding to treatment.

Mary x

[EleanorPV]

Great news. Well done with keeping with Pegasys

[Deece]

Great news. Good to hear some positive outcomes 😊

[Mazcd Partner MPNVoice]

very good news and a very positive post. Maz

[Ebot]

Great news. I recognise your elation.

Those pesky little red asterisks highlighting all my dodgy blood counts are diminishing with every visit. And even the ones that remain are only just outside normal range. Oh what it is to be normal! Well, normal-ish!

I too realised yesterday when taking the dog for a brisk once round the park, that for the first time in years, it was actually a brisk walk. And one that didn’t end in a crawl.

Thank heavens for Hydroxy. The little miracle workers. Long may it continue. Keep Well!

[ansaseeker]

Brilliant news, and thanks for sharing. Marilyn x

[redumbrella]

Great to hear you positive news may it long continue.

Garry

[Sheryljean]

Congrats! Great news

[Hidden]

Congrats!!!I have heard of remission phase after stoping pegasys... Or was it interferon...idk ...anyways ... Hope your count remain stable for long long time....

[Marossi in reply to Hidden]

It’s true that some lucky people experience molecular remission with Pegasys (which is a type of interferon). We’re not there yet but I live in hope! Thanks for your kind wishes.

[Mackydee123]

That’s wonderful news! I’m really glad you have got your life back. I’m on Peg for ET and I think it’s a wonder drug! same initial reaction as you but I’ve tolerated it very well and after 17 weeks my platelets are down from just under 1.1m to within normal range at 358 and I feel so much better for it!

I’m running 2 cases at work (something I couldn’t have done 6 months ago) and I’m back to falling asleep on the sofa as soon as I get in but I know it’s down to good old mental and physical exertion and not the mechanics of the disease and so I’m ok with that.

Life feels good at the minute, I’m delighted yours does too!

Best wishes

Kerry

[mbr8076]

So glad to hear